My story and how being diagnosed with HSV 1 changed how I forever look and feel about myself

[Frankie1]

I'm new to H and this site. Am on another H forum but everyone who I tell I have constant pain, irritation, neuralgia, symptoms says H does not cause those things. I have ghsv1 and am only 9 mos. in w/No end in sight. Acyclovir did nothing. This pain on top of the mental anguish I face in regards to how this occured and I am ready to be done. I appreciate finding you guys and hope to gain anything from your experiences/insight.

[2Legit2Quit]

@frankie1 are you located in the states? Are you seeing a GP or GYNO? They told me the same thing and I had severe neuropathy. Don't listen to them. Do you have any underlying health issues? Autoimmune disease's, other symptoms before H that didn't feel right, eczema/psoriasis?

[Frankie1]

@frankie1 are you located in the states? Are you seeing a GP or GYNO? They told me the same thing and I had severe neuropathy. Don't listen to them. Do you have any underlying health issues? Autoimmune disease's, other symptoms before H that didn't feel right, eczema/psoriasis?

 

2...yes I am. I have constant redness and irritation at the site of infection. I dealt with RA when I was younger and have a very hyper immune system. I'm in great shape (lift, run, eat well).

Only relief I get is through gabapentin...mentally and physically beat up

[Frankie1]

I'm male btw so no Gyno lol. constant pain irritation at site of infection.

[2Legit2Quit]

Ok, well if you had RA, then I'm not surprised. I have autoimmune disease's and others as well and we have trouble controlling the virus. I too took the same meds you're on.

 

Have you googled an infectious disease doctor that specialize in herpes in your area? Are you taking daily antivirals?

[Frankie1]

Sassy please forgive me as I'm not trying hi jack your thread. Just in similar boat. Docs continue to state H doesn't cause constant symptoms. I disagree. Mine are very real and mos. of constant pain has me completely broken. Having trouble thinking this is a harmless skin disease. For me it's been a life sentence. No joy. In a black hole.

 

Tried acyclovir which I feel triggered this constant prodrome. I wake up @95%. Caffeine, hot water or any friction heightens the irritation badly. Next step Valtrex I guess. Unfortunately all autoimmune drugs will do is cause H to exacerbate.

Praying for any reprieve. I've lost my self badly

[2Legit2Quit]

I wouldn't take any suppressive drugs having H if you have autoimmune issues. @frankie1 , how long have you had H now? Are you on steroids?

[Frankie1]

Since February. What's reasoning for no AVs with autoimmunity? Haven't dealt with RA in years "remission". So no corticosteroids.

 

Needing any relief. Have tried GABApentin, LDN, acyclovir with zero relief

 

B12 helps but gives me some crying spells, etc. Stuck here

[2Legit2Quit]

Really you tried LDN? How long had you tried it and for how long? You haven't had H long, so I'm not sure how consistent you were w LDN and if you uooed the dosage properly.

 

No, I said no steroids should be taken if you can avoid it, while having H. As it seems to make it come back w avengence and people have trouble controlling H, even after they've quit the steroid's. Nothing wrong w taking antivirals w autoimmune disease's that I'm aware of.

 

I've just found those of us w autoimmune issues current or even symptoms from the past, just have major issues w controlling H.

[Frankie1]

2.5mg night for 3 weeks. 4 mg night for a few weeks. Nothing helped. Made me depressed even more. Even if a vaccine comes along I'm scared how my body would react to it.

 

The experts in my opinion know little about this disease. Thus it's spread.

[2Legit2Quit]

Yeah, your dosage was way too high starting off. Who was monitoring you in this?

[Frankie1]

Myself.

[2Legit2Quit]

Ok... Well there in lies the issues. It also takes longer to wokr for some, than other's, but you're supposed to start off at .5mlgs and go up every week or two depending on how you feel. You can't even validate if this is the real deal, because you got it online, not something we recommend.

[Frankie1]

I didn't buy it online. My MD prescribed it. Got it at. Compounding pharmacy in Colorado. Real deal. Didn't work.

[Frankie1]

I did do 1.25 for a week or so than turreted up. Maybe 6-8 weeks total. You can only get small dosage LDN at a few certain reputable pharmacies. Trust me I'm a doc myself. I know it works for some but did nothing for me. Not trying be negative just honest. I felt my mood start to dip that's about it.

[Frankie1]

*titrated

[2Legit2Quit]

You're a doctor? What kind?

[Frankie1]

DC

[2Legit2Quit]

Dunno what DC is, other than the city! ;-)~

[WCSDancer2010]

Sassy please forgive me as I'm not trying hi jack your thread. Just in similar boat. Docs continue to state H doesn't cause constant symptoms. I disagree. Mine are very real and mos. of constant pain has me completely broken. Having trouble thinking this is a harmless skin disease. For me it's been a life sentence. No joy. In a black hole.

 

So sorry you are suffering so much. Perhaps you should contact Westover Heights clinic. They may have some ideas for you regarding dealing with H with an Autoimmune Disease.

 

And you may want to look into Low Dose Naltrexone...LDN has some potential for people like yourself who have ongoing pain due to post herpatic neuralgia.

 

https://www.drgonzalezmd.com/low-dose-naltrexone-for-fewer-herpes-outbreaks/

 

 

[Frankie1]

WS thank you. I've done both those options to no avail.

[WCSDancer2010]

So you tried the Naltrexone? If so, we have people on here who are interested in if/how it works (or not)

[Frankie1]

See my responses above. Constant irritation didn't stop. Just made me cry on the drop of a dime and depressed. Got off it and that stopped. I am def. prone to autoimmunity due to eczema, allergies and another previous autoimmune disease